Age, patient experience and satisfaction with breast cancer care: a cohort study using linked national cancer patient experience survey and cancer registry data.

OBJECTIVE: To examine whether satisfaction with information provision and involvement in decision-making among people with breast cancer (BC) treated in English hospitals was associated with age and other patient characteristics. DESIGN: Retrospective population-based cohort study, conducted as part of the National Audit of Primary Breast Cancer and the National Audit of Metastatic Breast Cancer. SETTING: National Cancer Patient Experience Survey (CPES) responses linked to National Cancer Registration data for BC patients (stage 0-4) diagnosed between 2017 and 2021. PARTICIPANTS: 40 018 patients diagnosed with BC who responded to CPES between 2017 and 2021. PRIMARY AND SECONDARY OUTCOME MEASURES: Responses to questions about overall experience of care, satisfaction with information provision, involvement in decision-making and clinical nurse specialist (CNS) contact were examined. The relationships between responses, personal, disease and clinical characteristics were analysed using multivariable Poisson regression. RESULTS: 90% of patients rated their overall care as ≥8 out of 10 (0=very poor; 10=very good), decreasing to 82% for those aged <40 years (p<0.001). Adjusted analysis showed that stage 4 disease (incidence risk ratio (IRR) 1.19; CI 1.02 to 1.40; p<0.001), the highest deprivation (IRR 1.18; CI 1.07 to 1.30; p<0.001) and Asian (IRR 1.60; CI 1.42 to 1.82; p<0.001) or Black (IRR 1.53; CI 1.30 to 1.80; p<0.001) ethnicity were associated with a negative overall care experience. Satisfaction was high for information provision (85%) and involvement in decisions (81%), but lower among younger patients and those with advanced stage disease (both p<0.001). Fewer than 70% of patients aged <40 years felt sufficiently involved in decisions, compared with 81% >40 years (p<0.001). Patients with stage 4 disease were more likely to report dissatisfaction with involvement in decision-making (IRR 1.50: CI 1.36 to 2.67; p<0.001). Most patients (95%) had a named CNS, with 85% reporting ease of contact. CONCLUSION: Most patients reported high satisfaction with their BC care. Satisfaction was consistently lower among younger people and those with advanced disease; this finding might partly reflect more complex pathways but requires further exploration, ideally in partnership with patients to codesign solutions. Actionable remedial strategies are proposed.